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Author
Topic: Why do so many people with HIV choose to make it a lifestyle? (Read 16080 times)

I was watching an episode of "The Golden Girls" earlier this morning. It was an episode where someone Rose knew died. Dorothy was talking to Blache about how different cultures deal with death and mourning, and then she said "It's these Southern Protestants that make it [mourning] a way of life". And I thought that was relevant to a lot of HIV+ people. They choose to make it a lifestyle, or a way of life. For you nitpickers, I am not talking about people who are in serious pain, or dealing with persistent opportunistic infections.

I don't know. For me it must be different. I just want to take my medication, get my CD4 and Viral Load test done every few months and thats it. I am perfectly capable of resuming the life I had before hand. I don't want to be a professional patient. AIDS is a disease, not a lifestyle.

AIDS is a huge part of my life. I don't have a bumper sticker on my car that says "Hey, I have AIDS," but I always take it into account when making decisions about my life. I don't know that I'd really call that a lifestyle, maybe just a part of life.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

AIDS is a part of my life now. Every decision I make is coupled with the fact that I am HIV positive. I do not find this to be a bad thing. I live with this disease, its stigma, its psychological effects. In some ways as has been said before it enriches what I do. I has changed my view of life and those that live it. It has increased my desire to help others. I was never one to live my life in fear, but now I live my life with deep respect, respect for life and the human experience of that life. I refuse to ignore the fact that I am HIV positive but also refuse to let it dictate the quality of my existence. That I have control over.PeterWho lives in Metro Detroit, Michigan where no one has a lifestyle!

Yes, I had the wasting syndrome like 13 years ago and went down to 87 lbs (I'm 5'9"). I also had PCP. Those were major life-changing things to go through. So that's why I say AIDS is a big part of my life.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I think you might be making a generalisation about the way that HIV+ people live their lives.

I will speak for myself when I say that it has a big impact on the way that I live. I have been diagnosed three and a half years. As time went on, it has become less important. I realised that I'm not going to suddenly pass away and the depression that followed diagnosis has dissipated.

I think you may cause offence to many when you say that people live HIV as a lifestyle. There are various reasons that keep this virus at the forefront of people's lives: stigma, prejudice, poverty, access to services, mental illness and depression, disability, being unable to work, along with all the opportunistic illnesses, etc, etc. People deal with this virus in many different ways. Down the line, you may find that you have to change your point of view when faced with some of the challenges that this virus bring you.

I think each person needs to find their own way, and my experience is that this can change with time.In the early years following my positive test I guess it was a massive part of my life, and I was involved in local voluntary organisations as well as working with HIV. As my health declined and I had to give up work, being connected to the voluntary sector became evem more important.Then HAART came about, and off I went back to work, away from anything connected with HIV and rebuilt my life, I find that I have very little contact with the world of HIV outside of my 4 monthly trips to the clinic. All of the people I knew with HIV are dead, and having lived abroad for nearly 5 years I lost contact with the voluntary sectoe here (moved back to same area again).

That's where I'm at now, but I am very open to the fact that at some point it may change and I may feel the need to get more involved again. I think that going with the flow is what matters.

Jamie, I have read all your threads and posts and shaken my head at some of the comments and thought maybe it's an age thing or being fairly new to being positive, and held my comments. But this is going to far!!!

I think if you have no problem being poz, that is great. I too have handled my 18 months of being poz well and have had no medical problems or suffered side effects from my meds. However, I realize that I am lucky and that many pozzies suffer greatly. Some of the great meds we have now, fail to help others. You are very insensitive to the fact that HIV affects each person differently from the way the individual deals with the disease to the way the disease affects each individual. How each person handles it isn't for you to judge or comment on.

I have been guilty of questioning some of the ways people deal with HIV, but have learned so much through these forums. I hope you will also.

Woods

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"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it." Nelson Mandela

The question posed in this thread makes me so angry, I cannot respond in a civil manner. Let's just say I agree with dad1216, I haven't really been in the "driver's seat" with this one for a long time. I really and truly hope that some of you newly diagnosed never have to face what some of us have. I would not wish that on my worst enemy. But to act is if we made some "choice" about it.....

Grow up, and grow up quickly. Don't want to? Too bad, neither did a lot of us. That's all I'm going to say

Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

For some people, it IS as simple as taking your meds and going about your life. For others, AIDS has so totally taken over their old normal lives that it is their life now.

Using myself as an example, I've lost my partner of 10 yrs to this. I was hospitalized several times. Been on over a dozen different med regimes. Had to go onto disability. Lost my house. Lost all my friends from the 80s and 90s. I've barfed more times that seems humanly possible from the side effects of the meds. Lived like a hermit for over 3 yrs due to PCP and having only 2 tcells. The list goes on; but I'm sure you get the drift.

AIDS totally took away the life I was having, and now I'm living a new life where having AIDS is the biggest influence over every decision and action I make. Because of how my life have changed, I can't just NOT think about AIDS. Heck I just fllew home to visit my family and had to consider how much of a risk I was taking by going to the airport and exposing myself to who knows what germs all those people might be spreading about. (Damn the risks though! I did take the flight, did celebrate my Grandmother's 90th birthday, and promptly came home and puked for two days. Somewhere along the line, I did run into some bad germs; but it was worth it)

I don't think most people that I'm met here make AIDS an actual "lifestyle"; but when you've been effected as bad as some have for so many years, then it definitely does change your life and becomes something that you must consider with every decision. Hopefully, the meds will continue to improve and your life will never be effected in this way.

(16 posts while I was typing this; but I'll leave it. It's polite and hopefully points out some of the differences between living with this disease a short time versus long term survival through the last years from only AZT to the meds available today)

I see that you have had your "first bloodwork" since being diagnosed. Remind me how long its been, perhaps only 3 months for you?

HIV is not something many of us CHOOSE as a lifestyle, it is something we can't help but have permeate our everyday life. I have been pos for almost 14 years and have been very "high-maintenance" with my health. When I got tested, I didn't think I would have a pos result come back. I took the test "just in case" because I was in a relationship with the man I would marry, and hadn't been tested since college, two years prior. I am diabetic and have always been in-tune with my health. That is what prompted me to get the HIV test "just in case." In case you didn't see my thread yest, I am widowed because of this virus as well. 11 years now.

Since my diagnosis I have been a fighter, I have always gone to the doc's every three months to review lab results, nevermind my other docs appts for diabetes, eye trouble, fibromyalgia, women's health......and what if I had a cold or the flu? My point is, with this virus you cannot just sit idle. Sure, in the beginning when I was newly diagnosed, I just did what the doctors said to do, got my results and waited to see if my CD4 would drop. When it did, I went on meds. The management of the virus was easier then. But as you go down the road of being a positive person you realize that hey, I might actually live a regular, long life, IF I take care of myself and be proactive with this virus.

This comes from ME, and I consider myself one of the lucky ones in these forums. Many pos people here have been through the fires of hell with single-digit CD4 counts and numerous OIs, only to come back from it, grateful to still have a chance.

Its not a "lifestyle" that we CHOOSE on our own, we don't have a choice if we are going to win this battle. Perhaps you should have named this thread "Why Are So Many People SO Pro-Active with the Virus?"

In a way I have to agree. I have made mistakes,most financial and career related,because I thought my life would end early. But then how do you get life insurance so you can start a business if you are hiv? You dont.I think most of us who have been HIV for awhile have made these same mistakes,but we didnt know then what we know now,and Bob Seger was dead wrong. We didnt have the luxury of knowing we would survive HIV and most likely die from natural causes unrelated to HIV. Most of us realize this now but you have to excuse us if we get sentimental,cause if you havent spent time in a waiting room where every person around you looks like they are gonna die, you dont know where we came from,no matter how hard you try. But thanks for trying.

I'm going to respond to this thread, even though Mr. Jamie is ignoring me for being "daft" (which is a direct quote from his signature). Now he's taken to listing all the individuals he is ignoring in his signature. I think his inclination to ignoring people who do not agree with him demonstrates his immaturity, and that he is not looking for serious discussion.

So, this response is for everyone else.

I think what Jamie is intimating is that he believes many people dwell on HIV too much, let it rule their lives, wallow in self-pity. Of course, since Jamie is ignoring me, I can't ask him to elaborate on what he means by "making HIV a lifestyle". Personally, I can't think of anyone who does so. The reality is, HIV impacts each of us to varying degrees -- many significantly so!

I don't think Jamie knows anyone here well enough to state that they have made HIV a lifestyle. Talk about presumptous! I'd hope he would first seek to understand, rather than accuse.

And the nerve of him to challenge Bettytacy on what major issues she has had due to HIV!

At best, Jamie is not dealing very well with his recent diagnosis. At worst, he is in denial about what it may mean for him.

Regards,

Henry

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

I'm going to respond to this thread, even though Mr. Jamie is ignoring me for being "daft" (which is a direct quote from his signature). Now he's taken to listing all the individuals he is ignoring in his signature. I think his inclination to ignoring people who do not agree with him demonstrates his immaturity, and that he is not looking for serious discussion.

Hell, he's not even online NOW, like a "post and run" kinda thing. Get back in the hot seat, I say, esp since he is ignoring some of the coolest people on here!

Like others, I can't tell whether it's youth, newness to HIV or some other factor that leads you to make a generalisation about "lifestyle," but you'll get yours soon enough. I may have not had any difficulting with the disease since the first few months of taking meds, but I recognize what a radical change it has made in my life, particularly as a sexually vibrant Queerman... viral apartheid is alive and wellout there, and I hope that you are prepared for its sting.

Now, as for T needing new pursuits, there's collar in my dresser drawer in need of a good boy to wear it proudly!

Now he's taken to listing all the individuals he is ignoring in his signature. I think his inclination to ignoring people who do not agree with him demonstrates his immaturity, and that he is not looking for serious discussion.

exactly. I think alot of these issues are like that between newly poz and LTS. The docs tell people not to worry, the meds are so much better. And of course they are. But if they don't work for you (and the docs don't really tell you about that) then you're opinion changes over time about what living with HIV is really like.

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Hell, he's not even online NOW, like a "post and run" kinda thing. Get back in the hot seat, I say, esp since he is ignoring some of the coolest people on here!

Jamie I've read many of your posts... I also take in consideration of your age... 21... where was I at 21? Well I was not worried about cd4s, meds, serious diseases, college, financial responsibilities, health care etc... I was bar hopping, in college, thinking anyone over 30 was way old... buying the latest trends in clothing, music, etc... etc.. etc... I've dealt with hiv+ for 16 years... I've been extremely fortunate... I'm from a family of means... I've never had to worry about finances... food, clothing, meds... health insurance, carreer... I never had to think about if I was going to college but, Where I was going to attend...

Now I have to think what will happen when I'm no longer able to work? or possibly a terrorist attack which possibly cuts out my med supply, income... my bank account not accessable, gas for my automobile... what if its not obtainable no matter what the price... food is it safe to eat? so many factors that can and may possibly affect ones life... what new virus that may take many of us out... I think most people living with hiv are more attuned to the issues everyone faces from day to day... in more a short term evaluation of themselves and not to become complacent... for the longterm..

2/3rds of my life have been spent if I have a average lifespan... Your 21... 1/3rd of your lifespan is gone... and at 21 youv'e added many extra obstacles on top of just being 21... Lets just see how after 10 years of taking meds etc... of dealing with hiv+ and all the challenges in your life... what your perceptions will be then...

exactly. I think alot of these issues are like that between newly poz and LTS. The docs tell people not to worry, the meds are so much better. And of course they are. But if they don't work for you (and the docs don't really tell you about that) then you're opinion changes over time about what living with HIV is really like.

That may be true - but considering his posts in the Mental Health forum and then the recent fracas in the Off Topic - I seriously question that this was an attempt for discusion or even a real question on his part.

I think it is a valid topic and I think it merits discussion, but coming immediately after what he just did in two offtopic threads - i see this more as an attempt to rile up the group and I'm not going to dignify this question in this thread based off of that.

That may be true - but considering his posts in the Mental Health forum and then the recent fracas in the Off Topic - I seriously question that this was an attempt for discusion or even a real question on his part.

I agree, what's up with some of the youngsters around here of late? No, not ALL of them....Molten and Mouse and many others post with tact in these forums.....is it youth that prevents some from seeing what is really going on? Is it denial?

Like others, I can't tell whether it's youth, newness to HIV or some other factor that leads you to make a generalisation about "lifestyle," but you'll get yours soon enough. I may have not had any difficulting with the disease since the first few months of taking meds, but I recognize what a radical change it has made in my life, particularly as a sexually vibrant Queerman... viral apartheid is alive and wellout there, and I hope that you are prepared for its sting.

Redhot says he is "new" to having the virus but certainly makes many valued contributions to the threads.

I think it may be that we are all so very different, even though we are all the same where the virus is concerned. It does not discriminate.

None of us did, but we are now. maybe you would be happier if all of us LTS gave up 20 + years ago so you wouldn't have to hear about the struggles we had to endure to get where we are today. Watching friends die, fighting for drugs & now some us (like myself) are on salvage therapy because we are resistant or severely allergic to medications that we don't have many options left.